Lords Diary: Kevin Shinkwin

After seeing his private member's bill fall, disabled peer Lord Shinkwin says the institutional prejudice that determines whether disabled human beings get to live or die must change

Campaigners demonstrate outside the Houses of Parliament over plans to introduce a new pre-natal screening technique which is expected to lead to a reduction in the number of children born with Down's syndrome.

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Start the week full of optimism following the preceding Friday’s Report Stage of my Bill on disability equality before birth. A bruising encounter, with several last-minute, hostile amendments designed to ensure disabled people like me never see the light of day. The House adjourns before they can all be debated; I am keen to confront the pro-discrimination lobby’s prejudice when Report Stage is completed.

Attend the opening of the Simon Wiesenthal Center’s powerful exhibition on Jewish history in the Commons. I think of his crucial work to bring Nazis to justice and how they regarded both Jews and disabled people as untermensch, in our case to be exterminated through their Action T4 euthanasia programme.

As a severely disabled person, I detest discrimination. So ending discrimination on grounds of disability where it begins, before birth, really matters to me, hence my Bill. It’s so modest that it wouldn’t actually prevent abortion on grounds of disability before 24 weeks – the time limit for non-disabled babies and by when most disabilities have been detected – as other grounds, such as injury to mental health, could be cited instead. Nonetheless it would establish equality at 24 weeks, so disabled babies would no longer be aborted right up to birth. Ironically, despite cynical, scaremongering objections from the pro-discrimination lobby, this would actually be in line with the original legislation.

Tuesday is dominated by Brexit business and by some bad news: I learn that all the other groups in the House have objected to my Bill being granted time to complete its Report Stage. So that’s it; my Bill’s dead, and more disabled babies will die as a result.

There’s something deeply disturbing about non-disabled politicians spouting equality and then in the same breath defending a law which is being used as a license to kill for the crime of being disabled. In fact, we’re now being killed in record numbers. Between 2005 and 2015, the number of disability abortions increased by 68% at a time when the overall rate decreased by 0.32%. Already 90% of babies diagnosed with Down’s syndrome are aborted. Soon, like Iceland, we could be Down’s syndrome-free.

What a shame the eugenicists ignore the inconvenient truth that that involves killing lots of little disabled human beings before they’re born. According to the NHS, in 2015, 3,213 babies were aborted for being disabled, 230 of them after 24 weeks. The pro-discrimination lobby implies that these are all so called ‘serious foetal anomalies’, a deeply subjective term which they fail to define. I wonder whether that includes the two babies with Down’s syndrome aborted in 2015 at 34 weeks. I briefly park the prejudice at an excellent CSJ dinner on free schools.

Wednesday sees me at the launch of a Nuffield Council on Bioethics report on the new non-invasive pregnancy test (NIPT). Parents need balanced information about their unborn baby. I ask what message it sends if, after birth, I’m good enough for the House of Lords but, before birth, I’m only good enough for the incinerator.

Too many in the medical establishment still view congenital disability as a tragedy to be eradicated through abortion. The institutional prejudice runs so deep that the whole system is in denial. What hope for worried parents or their disabled babies?

The irony is that this isn’t really about abortion. Ultimately, it’s about power, the power of non-disabled people to determine the fate of other – disabled – human beings, whether we should live or whether we should die. Prejudice must not prevail.

Thursday and I meet the new Head of Public Affairs of Macmillan Cancer Support. Its founder, Douglas Macmillan, is testimony to how much one individual can change the world for the better.

The House isn’t sitting this Friday, so I finish the week with a visit to an impressive small charity, which empowers disabled people through bespoke IT training – Ucandoit. That’s the spirit.

Lord Shinkwin is a Conservative peer

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Contributions from readers

penny_27240

10:15 on 13th March 2017

It was an honour and pleasure to meet and chat with you at the NIPT meeting, thank you for being an amazing advocate for people with disabilities.
As you say, reducing the cutoff date for termination of a baby diagnosed with a disability to 24 weeks, is actually just removing the discrimination currently still in place despite medical advances now making it much easier to detect problems much sooner in a pregnancy. And despite what most people think, it's not all about preventing people from having a termination, more important is to ensure that when an ante-natal diagnosis is made, that parents are given factual, unbiased information, the opportunity to meet other families who have an affected members and the time to ask questions and consider their options without any expectations of what they will do. Only then will everyone in this situation be able to make an INFORMED choice that is right for them as individuals.

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